Too young to care

Disabled parents need more support to ensure their children aren't forced to become carers, writes Emma Bowler

"My children, aged two and four, love helping out, trying to sweep, clean, tidy up, even putting my slippers on. Are we at the top of that slippery 'young carers' slope?" – Emma Bowler with her sons. Photograph: Emma Bowler

Emma Bowler

Friday 26 June 2009 06.03 EDT
First published on Friday 26 June 2009 06.03 EDT

This weekend, young carers will celebrate the 10th anniversary of the young carers festival, organised by the Children's Society with the YMCA. . Billed as an opportunity to share experiences and knowledge, it is also said to give these young people a break from responsibilities and the chance to have fun. But why are approximately 175,000 young people shouldering the responsibility of caring for family members, and even friends or neighbours?

As a disabled parent I've always been conscious of the young carer phenomenon. It worries me that some people might think disabled people have children so they can train them up to do the things they can't. My disability, Kniest syndrome, means that I am 4ft tall, my joints are very inflexible and I can't walk far. When I go out I tend to use a mobility scooter. I have two children, one who also has Kniest, the other doesn't.

My children, aged two and four, love helping out – unloading the dishwasher, unpacking the shopping, loading the washing machine, trying to sweep, clean and tidy up, even putting my slippers on. I'm sure young people do these things for non-disabled parents, but as a disabled parent there's always a niggle in the back of my mind – are my children merely learning about responsibilities or are we at the top of that slippery 'young carer' slope?

While a small minority of disabled parents may take advantage of their children, the majority seem to fall into this trap because of a lack of support from social services. Very few people would agree that it's right for a five to seven-year-old to be doing 50-plus hours of caring a week, yet the 2001 census found nearly 1,000 children in this age bracket doing precisely that.

How does society react to such a phenomenon? It develops a whole plethora of services and organisations for young carers. In contrast, there are just two key organisations for disabled parents: Disabled Parents Network and Disability, Pregnancy and Parenthood International – both struggle to support disabled parents on limited funding with only a handful of staff. Yet in many young carer set-ups it's the disabled parents that need the support. If they got that support their children wouldn't have to be young carers.

Society actually rewards children who take on these responsibilities, by giving out young carer awards. For example, the publicity for last year's Rotary Young Citizen Awards said of two of its winners, "the children are said to have no social life as they spend all their time looking after their parents and feel cut off from other youngsters".

Why do parents let their children take on a caring role when social services should be the ones providing that support? Young people are already under enormous pressure to perform at school. Surely out of school they are entitled to hang out with friends, play footie, ride bikes, do whatever young people do and not have to bear the sole responsibility for cleaning, cooking, tidying up, shopping and providing personal care.

One problem is that disabled parents often don't want to make too much noise about needing help for fear their offspring will be taken away. The other major barrier to getting appropriate support is that assessments for adults and children are done separately when a whole family approach would be far more beneficial.

Some might argue that having to take on a caring role has positive benefits. Hairy biker Dave Myers became a young carer when his mother was diagnosed with multiple sclerosis when he was eight. He says he would never had learned to cook if he hadn't had to when his mum couldn't. Britain's Eurovision contender Jade Ewen was also a young carer, looking after her blind father, partially blind and deaf mother and her two younger siblings. It doesn't seem to have held her back.

But Dave and Jade are exceptions rather than the norm. There are tens of thousands of young carers in the UK missing out on their childhood and potentially jeopardising their own futures. No number of support services, young carer awards or a few days off at a young carers festival is going to compensate them for that.